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Life and Family

There are 6 distinct life areas that must be addressed when caring for a person with a disability or chronic illness:

Lifestyle

This includes diet changes, skills like organizing and planning, and also how we adjust our values and priorities to accommodate illness, disabilities, physical limitations, or crisis.

Family

The symptoms and experience of a person’s illness or disability are not limited to him or her. Siblings are significantly affected. Marriages are challenged. Financial stress can impact the entire family. Schedules, routines, holidays, and family plans or traditions may all be disrupted.

School and Work

When caring for a child, your relationship with their school can depend on your child’s symptoms, experience, school personnel. Schools may need help to understand the way an illness or disability can affect social development, cognitive abilities, and learning.
In the workplace it can be challenging to advocate for your family’s needs, and find a way to succeed and thrive in a system that may not be designed to support your circumstances.

Personal

When you are caring for someone with an illness or disability you must adjust your goals and expectations. Your professional life may be impacted, your relationships may change, and your vision of your family’s future may be altered. You may question spiritual values that once brought you comfort and peace.

Community

It is important to find a support system of people who share and understand your experience. It is also necessary for communities to become more compassionate and helpful to families of people struggling with chronic illnesses, and emotional, intellectual or physical disabilities.

Health and Wellness

Your health and the health of your family may be affected by the circumstances of caring for someone with an illness or disability. In addition, there is the stress of making health-care decisions that may go against the values of your doctor, family, or culture. People in this situation may feel isolated, and exhausted from defending their decisions to others. They need supportive, collaborative relationships with physicians, medical professionals, and care providers.It is essential to find doctors willing to practice collaborative medicine – a strength-based, person-centered model of health care that considers diet, lifestyle choices, stress, relationships, resources, environment and personal goals in treatment plans.

“dimensions of the experience of illness or disability are often referred to as “caregiving” or the “burden of care”. The phrase “Work of Care” specifies the physical and mental efforts of specific tasks in which parents engage, while avoiding …. the negative and potentially biased emotive connotations of “burden” (p.5).
—Hexem Et Al., (2011) Noted